Aphasia is Not Near Fantasia

Eleven years after his stroke Bruce and I struck up a friendship that rapidly accelerated into romance, love and marriage. As with most newlyweds we struggled to communicate. For us, though, it was an amusing adventure seldom described in print.

Almost immediately, I found myself building a mental glossary for myself so I could understand him. "The room where I sleep at" (the bedroom) was not to be confused with "the place where I sleep at" (the bed).

"Behind me" meant anything but "behind". It usually meant in front of or next to and always meant nearby but very seldom did it truly mean "behind".

The "place where we eat food at" was a restaurant whereas "the area where we eat at" was the kitchen.

"The place of food" or "the place where I get food at" was a grocery store and was obviously not to be confused with the "place where we eat food at."

Ceiling lights, air conditioners and fans were either "open" or "closed" and windows were either "on" or "off".

The stroke victim's inability to communicate is called aphasia. Aphasia is an impairment of the ability to use or comprehend words, usually acquired as a result of a stroke or other brain injury. Aphasia can affect a stroke survivor's ability to communicate ranging from mildly impaired to severely impaired.

After suffering a severe stroke at the age of 36, which left him comatose over many weeks, Bruce's speech was severely impaired. Even after four years of speech therapy, it was difficult for him to understand spoken words and to express himself. His frustration with his new limitations led to outbursts of seeming anger or rage.

I have become very aware of how frustrating it is to be robbed of speech. As newlyweds, Bruce and I had quite the adventure learning to communicate. Considering that he was basically left to fend for himself just a few years after the stroke, the findings of a recent National Stroke Association report was a "no duh" moment for me.

According to the study conducted by the National Stroke Association an alarming number of stroke survivors are not receiving the proper information on rehabilitation and recovery after a stroke. "More than 40 percent of stroke survivors have reported limited success in meeting their rehabilitation goals, which include the ability [to] walk better and regain their speech."

The first four years following Bruce's stroke were spent in rehabilitation and therapy. For the following seven years, he struggled alone just to stay alive, to keep a roof over his head and food on his table. Thanks to efforts of a faithful Alcoholics Anonymous sponsor and many AA friends, he persevered and progressed, albeit slowly, without costly conventional therapy. Apparently, he is not alone in his post-stroke experience.

"While therapy has helped survivors achieve some degree of recovery, the majority are still at least somewhat disabled. They want to be able to work, drive, and participate in daily activities; and they claim what has been most challenging to them since their stroke is coping with physical loss, getting around, not being able to communicate with others as well, and not being able to take care of themselves. Many of them still need assistance with daily tasks such as taking medication, toileting, bathing, doing laundry, shopping, and dressing."

Some stroke survivors have described aphasia as the feeling we all get from time to time when "the word is right there, on the tip of our tongue." For moderately to severely affected aphasics, it happens with nearly every word.

Cognitive thoughts process in the aphasic's brain at the same level of comprehension as before the stroke. However, the stroke survivor struggles to put words to those thoughts and then to get those words out in any semblance of the original thought.

Consider that each thought you want to share is a clear image in your mind before having language appropriate to define it. Before the stroke, those thoughts translate effortlessly (in most cases) into language and communication. It is that process of translating cognitive thought to comprehensible language that is impaired after a stroke. If your mind forms the cognitive thought, for example, of being tired and feeling drawn to sleep; imagine then that nearly every word that you require to communicate is stuck just behind your lips. All you want to say is "I'm tired and I want to go to bed" and your mind won't release the language that describes the "feeling" of tired or defines the "place where you sleep at". It can be extremely frustrating, discouraging and demoralizing.

I rapidly adjusted to the broken vocabulary while I was face to face with my new husband and could see those things he was trying to define. It was a completely different story, though, when we would speak on the phone. My co-workers and I will never forget the day my new husband called me at work to tell me that he had cleaned "the area where we eat at."

"Oh", I said, "You cleaned the dining room?"

(Note to self: He does not have "dining room" in his vocabulary)

"No, no", Bruce said, "I mean where we keep the dishes at."

"That is the kitchen. Did you clean the kitchen?"

"No, no. Wait. Let me finish. I cleaned the area where we keep the dishes at."

"OH! You mean the cupboards? You cleaned the cupboards?"

"NO. Not there. Down. More down than the ... more down than what you just said."

(Note to self - Avoid jumping ahead of the conversation when he is trying to communicate.)

"Ah, the counter! You cleaned the counter!"

"NO. No, not the "cow dur." More down than that. Down. Down. Where we keep the dishes at."

I thought to myself, whatever he cleaned was in the kitchen (where we keep the dishes at), lower than the cupboards and lower than the counter.

"Huh?" I said, "You cleaned the dishwasher?"

(Note to self: just because he can't find the word does not mean he is stupid. Asking if he cleaned the dishwasher implied that he was stupid.)

"No!" he responded in disgust, "more down. More down from there."

"You cleaned the floor!" I had jumped to my feet. "You cleaned the kitchen floor!"

"YES! Finally" He yelled. "Yes, I cleaned the floor where we keep the dishes at."

"Wow! Thanks for doing that," was all I could say without cracking up.

The whole exchange had taken about 15 minutes and both of my office mates had pulled up their chairs to hear my side of the conversation. When I got off the phone, I was laughing. We were all laughing; but not in mockery. We were all invested in nurturing this kind-hearted man. As his wife, I was especially interested in helping Bruce strengthen his ability to communicate. It would have served no purpose for me to get frustrated with him.

For us, it has been grand enjoyment learning language together and finding our own unique way of communicating. We are in love and that gives us plenty of motivation. Because I seldom stop talking, he has been forced to communicate much more and with more words than he had in seven years of near seclusion.

Most jobs need people to be effective communicators (using the phone, writing reports, discussing ideas with colleagues/clients) and the majority of people with aphasia have to give up work or return at a lower level, though some people find rewarding employment that suits their abilities.

Before his stroke, Bruce worked in food service and sales. When we met, as well as when we married, he was working again in the food service industry. His duties had been reduced to stocking the cooking and dining stations, removing trash and performing other clean up duties. Occasionally he would cook burgers, hot dogs and hotlinks on the grill.

With the help of the training program at Deseret Industries, he now works in retail, on the sales floor and at the cash register. He received the highest marks in class after the new cash register training. He can count change, answer questions, give directions and hold conversation with just about anyone that speaks English. Being a productive part of society is one of the most important accomplishments for a stroke survivor. I don't know which makes my husband happier, to introduce his new wife or to say "I've been at work all day". Successful communication has been a major contributing factor in that success.